Klamblog - October 20th, 2021 · 10:29pm Oct 20th, 2021
I don't know how frequent or detailed these will be. I was already keeping a sort of personal health journal to try and figure out what the hell was wrong with me. Maybe these can serve as a sort of spiritual successor while also keeping those interested in the loop.
I have an appointment at the Mayo Clinic on November 9th. I'll be meeting with the two specialized surgeons that have been looking at my case. They're up to date with everything that's going on, as I've already transferred all my records and imaging results and stuff down there. But since there's only so much you can glean from images and after visit reports, this is essentially just an interview. If they feel the tumor is linked to my symptoms and merits prompt surgical intervention, we'll schedule a date. If not... Best guess: they'll schedule MRI's/check-ups every 6 months to monitor it. I don't know if they'll give me anything for my current symptoms in that scenario. It'll likely depend on if they think it's because of the tumor. Maybe they will, maybe they won't, but it won't be ideal in either case.
It's hard enough when you don't know what the hell is wrong with you. Adding the mystery of what makes it better or worse adds a whole new layer of difficulty. I saw a headache specialist last week at the behest of my old neurologist, and while I feel like some good questions came from that visit, there weren't near enough answers. The specialist said a lot of things, but one tidbit was she felt my described symptoms sounded like TMJ more than anything else. This is the first time I've heard anyone mention THAT. She gave me a referral to the local TMJ clinic and said to have my dentist check for signs of gum recession and/or an improper bite, so that's what I did yesterday. No gum recession, but the dentist did note my bite was a little off on the left side due to some crowns he put in back in May. He fixed it with some contouring. Has it made a difference? Can't really say. It does feel... different, but whether that's good or bad I'm not sure. I still have the ringing in my ears. I still feel incredibly unsteady whenever I try to do anything mentally strenuous. For this entire year, attempting to concentrate or do anything mentally strenuous always leads to a few outcomes. Either I wind up feeling incredibly unsteady like I'm swaying back and forth on a boat, or I feel nothing at all. It's like I'm trying to conduct a current through rubber.
The headache specialist said the symptoms of facial schwannoma are more associated with weakness, numbness, and loss of sensation. I think I know what she's talking about in that regard. It's not huge, but the left side of my face does feel "heavier". My left eyelid in particular, but also in regards to smiling. I also get these really weird pulsing sensations. Sometimes on my eyelid, sometimes on my temple, sometimes elsewhere. That and just general pain. I've had other symptoms too, but it's less clear if those are directly from the tumor itself. Some symptoms like the tinnitus are more in line with a vestibular schwannoma, which is the same kind of tumor, just on a different nerve. Given how close those two nerves in particular are to each other, it's not unheard for their symptoms to overlap.
But like I said, the rest of the symptoms are harder to sort apart. About all I can tell is that they're all caused by anything that involves using my facial/jaw muscles, or anything that puts pressure on or around my temples. So things like talking, chewing, drinking/swallowing, resting your chin on your elbows, moving your head quickly, wearing any kind of headware (even earbuds), sleeping on your side, the list goes on and on. Is it worth it to list what these symptoms are? I don't know. They keep changing. Some could be side effects of the meds I'm taking. Others might be due to my family's genetic disorder. Some of it could be freaking placebo for all I know.
I just don't know anymore. All I know is that it's three weeks until the consult with the surgeons. I'm going to try my best not to treat that date like some sort of finish line, tempting as that may be. If surgery gets the green flag and we can get it done this year, that'd be amazing. That's all I can extrapolate on right now.
I hope you can get in, seen and the work done you need asap.
Wishing you all the best, man. Stay with it.
Wishing you the best. I wish there was more I could do for you, but as things go I hope they will go as best as they can. :)
"hugs you tight"
Don't give up ;-; You can get through this.